Nachhaltige Vergütung der B‑Zentren für Seltene Erkrankungen in Deutschland

Status quo und Lösungsansätze

verfasst von

Svenja Litzkendorf, Daniela Eidt-Koch, Jan Zeidler, Johann Matthias Graf von der Schulenburg

Abstract

Background: To ensure specialized care of patients with rare diseases, numerous centres for rare diseases were funded over the past few years. The reimbursement of patients’ ambulatory care in hospitals, however, is characterized by a plurality of forms of care and payment. There is some evidence of deficits in the reimbursement of care of patients suffering from a rare disease from studies on individual rare diseases. Objectives: To investigate current forms of care provision and reimbursement of centres for rare diseases and to develop future approaches for sustainable compensation. Materials and methods: Initially, centres for rare diseases in Germany were asked to provide information about their forms of care and reimbursement using questionnaires. Subsequently, two focus group interviews and one expert interview with representatives from centres for rare diseases, health insurance, health politics and patients were conducted to discuss current and future meritocratic forms of care provision and reimbursement. The data were evaluated using content analysis. Results and conclusions: Thirty-nine centres for rare diseases participated in the questionnaire survey. Of those, 38% receive a flat fee/allowance for university outpatient departments, the amount of which varies notably, and 41% obtain a mixed payment comprising an allowance for university outpatient departments and other forms of reimbursement. An under-recovery of costs in centres for rare diseases and its impact on patient care were mentioned in the interviews. In this context, a need to further develop forms of care provision and reimbursement has been identified. Participants prefer a special flat fee/allowance for rare diseases that covers the time-consuming care for patients with rare diseases.

Organisationseinheit(en)

Institut für Gesundheitsökonomie
Institut für Versicherungsbetriebslehre

Externe Organisation(en)

Ostfalia Hochschule für angewandte Wissenschaften – Hochschule Braunschweig/Wolfenbüttel

Typ

Artikel

Journal

Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz

Band

65

Seiten

872-880

Anzahl der Seiten

9

ISSN

1436-9990

Publikationsdatum

09.2022

Publikationsstatus

Veröffentlicht

Peer-reviewed

Ja

ASJC Scopus Sachgebiete

Öffentliche Gesundheit, Umwelt- und Arbeitsmedizin

Ziele für nachhaltige Entwicklung

SDG 3 – Gute Gesundheit und Wohlergehen

Elektronische Version(en)

https://doi.org/10.1007/s00103-022-03562-7 (Zugang: Offen)